Squeaky Wheels

To Mark Ezzell, nothing could be plainer than that people with disabilities must get organized politically--and vote. Both are first-nature to him. He was born with spina bifida, an imperfect closure of the spiral cord resulting in paralysis of the legs. So he's always used leg braces or a wheelchair to get around. His birth mother, he guesses, couldn't deal with that, so he was raised to age 7 by a foster family in Greensboro. But just when it seemed that the combination of his age and physical condition would make it impossible for him to be adopted, along came the Ezzells of Rocky Mount. Dad was a lawyer, Jim Ezzell, who suffered from cerebral palsy. You may recognize the name. He was elected to the state Senate and served two terms before his death in 1991.

From his father's life, and his own, Mark Ezzell draws lessons of struggle, progress and the glorious role of politics in both.

"My father was not allowed to go to public school until the 11th grade because of his disability," Ezzell says. "They let him in only when his parents threatened to sue them. Up to then, he went to Catholic schools. I myself wasn't allowed in until the third grade. Politics--politicians--changed that."

Easy to see, then, how this guy got hooked on politics at the tender age of 8. It was 1972, the year of Nixon vs. McGovern, and his father was organizing Nash County for Hargrove "Skipper" Bowles, the liberal in the Democratic field for governor. "He shook my hand and told me to visit him in Raleigh if he won. If second-graders had been allowed to vote, he would have won."

Bowles lost in the primary, of course, but Ezzell's been upbeat about changing the world ever since. Through his teens and 20s, he campaigned for candidates and "lefty" causes at every level, from city council races to the 1988 presidential campaign of one Al Gore. He even ran for the legislature himself once from a district in High Point. He's worked for the League of Conservation Voters, the Institute on Alcohol and Substance Abuse at UNC-Chapel Hill, the Governor's Highway Safety Program and now, at 36, for the Governor's Crime Commission, where he's responsible for getting the most out of federal grants. At every step, his special interest has been the needs of people who are "disadvantaged in some respect."

Who better, then, to lead a campaign in North Carolina to get people with disabilities to vote? Working with the National Organization on Disabilities, Ezzell is organizing Access 2000, a drive to get such folks registered to vote, in the first place, and then to cast ballots in the fall elections in far greater numbers than they have in the past.

There is no reliable data on voting at the state level by those with disabilities. But polls taken for the NOD nationally indicate that just one-third of them aren't registered, and of the two-thirds who are registered, no more than half cast votes even in presidential elections.

There are as many reasons for the low voting rates as there are different forms of disability. But beyond the specific obstacles that a wheelchair user, or a blind person, might face at the polls, the general problem is a failure to grasp the power that voting conveys, Ezzell says. "We've got the Blanche DuBois approach to politics. We depend on the kindness of strangers," he grins. "That needs to change."

According to census data, 20 percent of the population has some disability and 10 percent are "severely disabled" either physically or mentally. That means they consider themselves (the census is self-reported) "unable to perform an essential function of life," most often work. Two-thirds are unemployed. Some 19 million Americans have serious vision or hearing problems. Two million are either blind or deaf. Two million more use wheelchairs.

Thus, far from powerless, Ezzell says, people with disabilities are the biggest minority group in the country. "And if you look at the history of minority groups, they've advanced in society through politics, by organizing themselves, advocating for issues and making themselves a political force."

Ezzell has two big weapons at his disposal for Access 2000. One is the seven-year-old "motor voter" law, an act of Congress that requires the state motor vehicle agencies--and every other organization spending federal funds for social services--to provide on-site voter registration for its clientele. The second is the staff of the state Board of Elections, which is on its own kick to get those with disabilities to vote and is pushing local elections boards to make sure their polling places are accessible to the physically handicapped.

The state elections board is also likely, at the staff's recommendation, to approve pilot programs in up to a dozen counties this year to test new Braille and "tactile" ballots for the blind, and to promote the availability of mail ballots for those who can't get to the polls, according to deputy director Michele Mrozkowski.

Access 2000 coincides with the 10th anniversary of the passage of the Americans With Disabilities Act, the landmark legislation best-known to the majority of people for requiring handicapped parking spaces. Actually, the ADA is a far-reaching piece of civil rights legislation for those with physical or mental infirmities. But as with other civil rights movements, advocates say, there comes a time when people, having won their legal rights, need to start translating them into tangible programs and real equality in the workplace and the community. For the ADA, that time is now.

In some ways, says Ken Franklin, the ADA "just opened up the world" to people with disabilities. One example he cites: Title IV of the law, governing telecommunications, resulted in every phone company providing so-called TTY (teletype) operators for the deaf and hearing impaired--relay operators who transmit typed messages when contacted via an 800 number. "In its public service announcement, Easter Seals' punch line was, "It took an act of Congress to order this pizza," he remembers.

On the other hand, Title I, which covers employment, "is not working," he says flatly. "But remember, people of color and women have been seeking equal employment opportunities since the Civil Rights Act of 1964. We didn't get started with the ADA until about 1992."

Until he retired recently, Franklin was the state's ADA coordinator, advising government agencies (and interested companies) on how to comply with the law. The key thing to know about it, he says, is that it is "complaint-driven." That is, it gives people with disabilities rights, and bars discrimination against them, but generally requires only that the world do what is "readily achievable" to accommodate their needs--and then only if they ask for it.

What's readily achievable for government isn't the same as for a private business, Franklin says, himself a wheelchair-user as the result of a muscular disease. At least, it's not in the view of the federal Department of Justice, which is charged with enforcing the law. State and local governments are considered to have the wherewithal to do most anything that's necessary to equalize conditions for the handicapped, from curb cuts for wheelchair-users to voice-activated software for blind or visually impaired employees. If the corner deli says adding an entry ramp onto its old building would be too expensive, however, it can probably get away with installing a doorbell and the promise of sidewalk service if you ring it.

In general, though, nothing will happen--in government or business--until somebody with a specific need complains, Franklin says. "And for people with disabilities, that's a very hard thing to get them to do."

Franklin's been working lately with a Raleigh-based nonprofit group, Universal Disability Advocates (UDA), whose mission is to get businesses and governments to do what they're supposed to do under the ADA. The group's founders met through N.C. State's Center for Universal Design and its leader, the late Ron Mace, who was a pioneer in making buildings accessible. That was three years ago, says spokesman Fred Johnson, whose own disability is a heart problem stemming from his military service in Vietnam. "We used to meet and do a lot of complaining without knowing what else to do."

They got serious when one of them went to the new N.C. Museum of History building in Raleigh and could not find a handicapped-accessible restroom. The state building code requires them, and in fact is considered quite progressive by the disabilities community. But it took repeated visits to discover that the accessible facilities were located where only the employees of the museum could get to them. The UDA members filed a complaint with the feds, and soon the museum was installing more restrooms out in the public areas.

That's the only complaint UDA has ever filed. Johnson says they'd rather work with people than against them. "We're assertive, we're business-like and we're patient," he says, "and we've been able to achieve a great deal over the last couple of years by asking people to consider our needs and helping them understand how they can meet them at a reasonable cost."

Access, he says, isn't just about getting into buildings, although it may start there. Programs, too, must sometimes be adapted if people with physical or mental handicaps are to use them, and community events often need a bit of augmentation. (See "Play by play," page 19.)

UDA has about 70 members, Johnson says, and $4,000 in grants from a federal agency to support its work contacting businesses. "We're bare-bones," he acknowledges, "but that's a good thing in a lot of ways. Anyway, it's reality, and it creates the opportunity for the disabilities community to come together at the grass roots and show what we can do."

Grass-roots organization, says Chet Mottershead, is exactly what has been missing in the nearly 40 years since he lost his legs during service with the Marine Corps. Mottershead went on to the University of Illinois, where a pathbreaking program trained disabled veterans for leadership roles in their communities. He ran an employment training and rehabilitation program in Rocky Mount for years and served on Gov. Jim Hunt's staff for a time in the '90s.

"It's been very, very difficult in the disabilities community--and I use that term loosely," Mottershead says. The problem is fragmentation. Those with physical handicaps have never made common cause with the mentally impaired, and even with the two groups, there are many factions. "We see very few common threads."

Thus, Mottershead is a big supporter of Access 2000 and Mark Ezzell's efforts. "We are light years ahead of where we were in 1961, but we are sorely behind where we ought to be," he says.

Mottershead points to three areas where government "just hasn't been willing to put the resources in." One is educational programs. If class sizes were small enough, he says, almost every student--regardless of their impairment--could be prepared to hold a job, with or without modest government subsidy. A second is help for alcoholics and drug abusers. Many are in jail because they can't get into rehab. The third area is technology. A variety of computer hardware and software is available to assist the visoin- and hearing-impaired, in particular, to live active, productive lives. But the money for them is not.

One other huge problem stands in the way of job opportunities, Mottershead says: health insurance. For people with disabilities, it's critical. They're covered by government programs if they don't work. They fear that if they do, they'll lose coverage--and while recent reforms have made that less likely, the people affected either don't know that or don't trust that the reforms won't be snatched away.

"We've tried several times over the last 30 years or so to get an umbrella group started that would work on these issues. It's gone in fits and starts, but it hasn't happened. If it had, Mark Ezzell would have a lot easier time getting people to vote."

While there's no umbrella group for folks with disabilities, there is one for the social service organizations that serve the mentally ill, substance abusers and the developmentally disabled. Called Coalition 2001, it includes groups like the Easter Seals Society, United Cerebral Palsy, the N.C. Brain Injury Association, and the National Alliance for the Mentally Ill. Beth Melcher, NAMI's director of government relations, has been its chair the last two years and says the recently concluded session of the General Assembly was a good one for getting increased funding.

But Melcher notes that the group started out as Coalition 1989 with the goal of getting full funding for the system of community-based mental health care that is called for under federal law and spelled out in plans adopted by North Carolina government more than a decade ago. Full funding is still far off, she says, and a key reason is that those who need the programs are not an organized voting bloc.

As a result, they haven't had a real champion in the General Assembly since the late Sen. Kenneth Royall, D-Durham, retired a decade ago.

"We've never been able to make the needs of the disabled a campaign issue," Melcher says. "Our people don't have influence, and they don't have a political action committee. The only thing we do have is people power, and we need to get better at using it."

Mottershead agrees. "Disabled folks have got to stand up, literally as well as figuratively, and stop letting non-disabled folks tell us how to live our lives."

Access 2000 won't solve these problems, Ezzell cautions. It won't even address them--directly. What it will do, if it succeeds, is be step one in the process of getting those with disabilities to recognize their potential political power.

Right now, Ezzell is working under the banner of the National Organization on Disabilities, but he expects to start a new North Carolina-based nonprofit group to continue working on voting issues beyond this year's elections. Because it will be an educational nonprofit, it cannot be a lobbying group under federal tax laws. However, Ezzell expects that as more folks with disabilities start voting, others will take the lead in forming a separate group that can lobby on their behalf.

His focus is on voting impediments. Why aren't people registered, and if they are, why don't they vote? There are two main reasons, he thinks. One is a variety of physical barriers to voting. Folks may need help getting to the polls. They may not actually be able to get into the polling place if, for example, it lacks wheelchair access. Or, if they're visually impaired, they may not be able to read the ballot or be comfortable asking someone they don't know help them mark it.

The state Board of Elections has been great on these issues, Ezzell says, and is working with him on increasing awareness that most of the state's polling places--at least 80 percent--will be ready for handicapped voters come Election Day.

The second reason is tougher. It's the social isolation of many of those with disabilities. They frequently don't belong to any organization that's involved with politics, if indeed they belong to a group at all. "You've got a lot of people whose major concern in life is how do I get to work, how do I get to the bathroom, how do I breathe, even--and if that's your concern, you don't have a lot of time for political action," Ezzell says.

So Ezzell is turning to the social service agencies that assist the disabled, and pointing out to them that they have a responsibility under the motor-voter law to actively promote voter registration. It isn't enough just to have the forms in a drawer. Somebody needs to take the lead and organize outreach to the clients.

Beyond that, Ezzell wants the groups to help him organize a nonpartisan "get out the vote" drive at election time, including mail and phone calls encouraging the newly registered voters--and those who were registered already--to follow through at the polls.

Mottershead points, too, to the friends, parents and guardians of disabled people, who too often have very low expectations about what can be achieved. They need to recognize that, with help, disabilities need not be debilitating.

That's Ezzell's view as well. "You have to consider what's holding you back. The problems I've had in my life are really not physical in nature, they're cultural; they are in the way our society is constructed."

Americans have learned to view people with disabilities as one of two things--either admirable, or pitiful, or perhaps both, he says. "Those stereotypes are just as strong as any racial or gender stereotypes are. But so far, they are not combatted in any effective way either by the media or society."

That's odd, Ezzell thinks. "Because we're the only minority group that anyone is able to join any time they want--and may join, whether they want to or not."